Can You Help Jenny?
Tuesday, August 05, 2008
JC Jones MA RN
A friend reached out to Healthline and requested our help in getting the word out about Jenny, a 14 year old girl from Northern California with atypical motor neuron disease. Motor neuron diseases, like Lou Gehrig's Disease, are progressive muscle weakness disorders.
Mysteriously, over the course of one year, Jenny has gone from being a healthy, active teenager to being nearly completely paralyzed. She began showing symptoms of weakness in spring of 2007, shortly after receiving her third dose of the Gardasil vaccine, however, there is no clear causal relation. In fact, Jenny's father has stated “The FDA and CIDC have been helpful at a personal level in responding to my queries about Gardasil, especially the specific lot that was administered to Jenny. However, the current reporting regulations for pharmaceutical companies and regulatory agencies are simply inadequate at being able to identify whether a particular vaccine has a higher than normal risk factor.” By March 2008, Jenny was wheelchair bound.
She has had a comprehensive medical work-up and at this point, Jenny, her family and the medical community are asking for your help in finding people with comparable medical histories.
Am I a Comparable?
A List of Comparable Traits,from most relevant to least:
a. Has had similar rapid weakening, going from healthy to paralyzed very quickly
b. Teenage girl, with recent onset of menses (periods)
c. Have had similar treatments: IVIG, plasmapheresis, multiple forms of steroids and Cytoxin (an immunosuppressant), a “mitochondrial cocktail” of antioxidants, and lithium and riluzole
d. Recent HPV vaccine
e. Possibly family history of neural diseases, such as seizures and/or a rare palsies
f. Possibly had an auto‐immune condition in the past, such as skin condition like
pityriasis lichenoides
A List of Comparable Traits,from most relevant to least:
a. Has had similar rapid weakening, going from healthy to paralyzed very quickly
b. Teenage girl, with recent onset of menses (periods)
c. Have had similar treatments: IVIG, plasmapheresis, multiple forms of steroids and Cytoxin (an immunosuppressant), a “mitochondrial cocktail” of antioxidants, and lithium and riluzole
d. Recent HPV vaccine
e. Possibly family history of neural diseases, such as seizures and/or a rare palsies
f. Possibly had an auto‐immune condition in the past, such as skin condition like
pityriasis lichenoides
g. Possible heavy‐metal exposure, for example aluminum or environmental mercury exposure.
If you know anyone meeting some of these criteria, please email Jenny and her family. The cause of Jenny’s illness remains a medical mystery. Finding relevant comparables could help to solve that mystery and thus provide a crucial clue to finding the treatment that could save Jenny’s life. Time is of the essence because Jenny is now a quadriplegic and is losing the struggle to breathe. Therefore, the family appeals to you to bring any potential comparables to their notice by sending an e-mail to jenjensfamily@gmail.com.
If you know anyone meeting some of these criteria, please email Jenny and her family. The cause of Jenny’s illness remains a medical mystery. Finding relevant comparables could help to solve that mystery and thus provide a crucial clue to finding the treatment that could save Jenny’s life. Time is of the essence because Jenny is now a quadriplegic and is losing the struggle to breathe. Therefore, the family appeals to you to bring any potential comparables to their notice by sending an e-mail to jenjensfamily@gmail.com.
Labels: atypical motor neuron disease, Gardasil vaccine, juvenile ALS
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